Rachel’s Story

In Her Own Words (Age 15, living in California)

Lyme disease has stolen my ability to be hugged. It’s awful. I used to love to hug people, but one of my many Lyme symptoms is hypersensitive, painful shoulders. If someone touches them, it feels like I’m being stung by a thousand bees. And the worst part is that people don’t understand because I don’t look sick. My extreme shoulder pain is something that no one can see.

In addition to my shoulders, I have severe pain in my back and knees. I hurt too much to stand, walk or sit upright. Even a conventional wheelchair won’t work for me. I need a special wheelchair with a reclining back. Often, when people see my wheelchair for the first time, they say, “Wow, that sure looks comfortable!” But I am never comfortable.

Because I just look like a regular girl sitting in a wheelchair, adults always seem to want to pat me on the shoulder—even people I’ve never met before. When people approach me, I have to remember to turn my wheelchair to block them from touching my shoulders. Many people don’t pay attention to that signal, reach over and pat me anyway. My friends and I joke about putting spikes on my shirt, but I doubt that would help. I wish people would understand that when you have chronic Lyme disease, most symptoms are not visible, like my extreme pain.

Like many others with Lyme, I have also suffered from memory loss, fatigue, depression and difficulty concentrating, also invisible symptoms. This makes it hard for teachers to understand how hard schoolwork can be for students with Lyme. And don’t even get me started on herxing, or other bad reactions to medications! [Editor’s note: A “herx”, or “Jarisch-Herxheimer reaction is a flare of the symptoms, often severe, as the antimicrobial medications kill off the infection].

I often have a smile on my face and I love to laugh. But that only works against me, when it comes to people understanding and appreciating the extent of my illness. When people look at me, they see a 15 year old girl who is just having a fun time. They don’t realize that every second of every day I am suffering.

Lots of people come up to me and say, “You look great!” And I know that they mean it as a compliment, but that makes me feel like they don’t believe that I am truly sick. Sometimes I am bombarded with comments about how much better I am doing, made by people who really have no understanding of the situation. It only makes me feel more disconnected when they make comments like these.

I have gotten to know a number of other teens with Lyme who also say that people don’t really believe they are sick. We’ve all been disbelieved at doctor’s appointments (before we found doctors that diagnosed our Lyme), school, and with family and friends. Sometimes I hear comments behind my back from people at school about how dramatic I am being and how I am faking all of this for attention. Why in the world would I fake these miserable symptoms? Why would I want this kind of attention? Why won’t people just keep their comments—and their hands—to themselves?

A positive thing that has come out of this whole experience is that I have found talents I didn’t know I had. Because I haven’t been able to walk, I had to learn things I could do staying put. I focused on teaching myself how to shoot and edit music videos. It is something that I can do sitting or lying down, and even when I get better I will continue to do this.